published_or_final_version / Surgery / Doctoral / Doctor of Philosophy

Living arrangements play a key role in affecting participation of people with intellectual disabilities (PwIDs) in the community. Yet, the role of living arrangements in affecting participation has received relatively scant attention, especially from the insider's perspectives. This qualitative study sought to gain an insider's perspective from PwIDs in understanding the meaning of community participation, and the role of different community living arrangements in promoting community participation. Five adults with intellectual disability who were living independently with support were interviewed for this study. A model of full participation was developed to address the relationship between community living and community participation constituting four themes; level and type of support, learning experiences, freedom and choice, and privacy and safety. No gold standard for ideal community participation emerged from the study. Community participation of PwIDs was identified as involvement in meaningful and learning activities as required by the person. / October 2015

This dissertation examines the extent to which individual-level and social network-level factors explain disparities in living donor kidney transplantation (LDKT) and considers the moral implications. Paper One examines whether patient characteristics explain racial disparities in the rate of donor presentation and LDKT in a sample of 752 potential kidney recipients and 654 potential kidney donors. Propensity score matching and subclassification were used to balance the patient characteristics. Survival models revealed that only 24% of blacks compared to 39% of whites would have at least one potential donor evaluated within the first year, even after accounting for differences in the distribution of patient characteristics. Thus, lower rates of donor presentation among black recipients cannot be explained by differences in individual-level characteristics. Paper Two examines whether differences in social networks contribute to disparities in LDKT. Using interview and medical record data from a representative sample of 389 dialysis patients in Greater Boston and a subsample of 302 alters, we found that social network characteristics, especially network size, were strongly predictive of pursuing LDKT. Significant racial disparities in health and medical distrust among social networks of black patients present compelling evidence for network effects. Fewer network members of black patients may be eligible for donation owing to compositional health differences, and those eligible may be less willing to donate due to greater distrust or poor socioeconomic position. Paper Three argues that society ought to be concerned with previously neglected disparities in LDKT, specifically the fraction stemming from disparities in social networks because networks provide one pathway by which inequalities can be perpetuated throughout society and over time. Insofar as social networks are influenced by an unjust distribution of social forces, and social networks influence life chances by restricting (or enhancing) one’s ability to obtain a LDKT, then life chances of dialysis patients are unjustly determined by social networks. Potential policies aimed at providing compensatory damages to patients whose networks have been adversely affected by the unjust influence of social determinants are examined.

The aim of this thesis was to explore and describe foodwork and meals for older persons with dementia and their partners in ordinary homes. Descriptive and explorative designs were used in the four papers this thesis is based on. Longitudinal data, including older home-living unlike-sex twins, were analysed using descriptive and analytical statistics. An ethnographic approach was used to describe everyday life for persons with dementia. Interviews with partners and staff were analysed using thematic analysis and qualitative content analysis, respectively. The results revealed that, among home-living older persons, there is an association between a person’s cognitive ability and nutritional status; i.e. low cognitive ability leads to increased risk of malnutrition. For home-living persons with dementia and their partners, foodwork and meals sometimes changed, meaning that shopping, preparing food and eating as well as social interaction become complicated, which seemed to lead to transitions in roles, routines and relations. There was foodwork that the persons with dementia could perform, and participants expressed a desire that abilities and independence be preserved. However, support was sometimes needed, and it was emphasized that this was based on the person’s needs, wishes and problems. In conclusion, there is an association between decreased cognitive ability and increased risk of malnutrition. Furthermore, foodwork and meals affected both persons with dementia and their partners. Therefore, early intervention whereby both partners in a couple get individually adjusted support is of importance. Consequently, a person-centred care approach can be useful in arranging the support.

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At the outset, I dis-claim any knowledge or understanding what-so-ever, which is a peculiar stance to take for a nurse educator immersed in the language of “expertise,” “best practices,” and “champion” healthcare offerings. I do not dis-claim knowledge to absolve my professional accountability, nor do I absolve myself of being responsible for my text, rather I apprehend this journey of sentience and incarnation as an infant experiencing and learning the world in which it finds itself. It is only through a naïve, furtive play that I am able to proceed, through the difficulties and paradoxical tensions of constructed identities, without complete paralysis. As I play and ponder my way through multiple methodologies, a representational form emerges between repetitious moments of contemplation, remembering lived experiences, and reflecting on philosophical discourses. The difficulty or tension lies in the provocation of identities, as nurse, educator, and mother, among many other stances and formulations. Each identified discourse compels me to challenge the gaps in my knowledge in new ways. As I explore, I unravel the forms of text that are various incarnations of narrative reflection. The choices I make are about inquiring through concept, form and identification, which I both uniquely challenge as an individual and hold in common by being socially and historically situated. Each transition, contemplation and provocation is hopeful and volatile. I am always attuned to how it is that I live the spaces between each, unknowing my “self” as my otherness, letting go the ideal/real and becoming the (/) through a relational pedagogy.

Medication management is among the most commonly cited reasons for moving to assisted living and is closely associated with resident quality of life. Yet, the issue has received little research attention. Using data from the state-wide study, “Job Satisfaction and Retention of Direct Care Staff in Assisted Living”, this thesis examines medication management practices and accompanying regulations across 45 facilities in Georgia. A combination of quantitative and qualitative analyses is used to examine surveys with 370 direct care workers (DCWs) and in-depth, qualitative interviews with 41 DCWs and 44 administrators. Findings suggest that medication practices are not uniform and vary across settings and frequently, within facilities, in some cases violating regulations. Facility size, administrative philosophy, staff training and backgrounds, resident frailty, communication between staff, and ambiguous regulations, influence medication management. Future improvement will depend on clarifying and modifying existing regulations in ways that are achievable in practice and protect residents’ rights.